Darlene

When I was diagnosed with POTS in 2004 I was a student at the Universtiy of Toledo. Don't know how I made it, but I did. I had not worked or thought about filing for disability. My thought was "I did not go to school all them years to be on disability". Getting some medical condition was never in my plan. After finishing my degree, I went back to school to get another degree. Of course the economy was getting bad, and there were no jobs. Well, I finally got a job. Nothing I went to school for, but it's a paycheck, and I figured it would do until something better came along. Well, I love my job, but the 20/25 hours I work a week feel like 60. I am now thinking I went to school for nothing. I wanted to better my life for my daughter and I, make more than a minimum waged job, and move away from this guy I have been living with(long story).

I need advice.

Where do I do from here?

This is the first time I have worked since my diagnosis, thought/hoped I would be able to handle it, and I think I can handle the 20/25 hours a week I have been working , so far. I don't know, have only been working 2 weeks. Its takes a lot out of me.

How can I be independent? I am sad living with this guy. But now, how will I be able to support myself? Don't think I can make a living on 20/25 hours a week, especially at the low wage I am making. I can't work more hours, because it take all I got to work what I do now.

I don't even have enough credits to qualify for disability.

Can you get disability while you are working? I hear some people get disability and work part time.

I need help. I am getting very depressed. I will not be able to accomplish my goals now because of my POTS.

I was a smoker at the time of my diagnosis, but quit not long after because smoking worsened my POTS symptoms.

I switched from metaprolol to propranolol renecently.The metaprolol works great for my tachycardia, but not so much for palpatations. So I thought I would give propranolol a try. My tachycardia had worsened, so I went back to the metaprolol.

I also take lexapro 20 mg once a day, recently I have cut the pill in half, taking 10 mg once a day, I did this because of the weight gain on lexapro, I hate to go off of lexapro, because it helps with my POTS, and when trying to go off of it in the past I get sick. But I have noticed by cutting the pill in half, my blood pressure has gone from being low to being normal, and my heart rate has increased. I am feeling nauseated, but I am going to see how it goes.

I have not worked since having POTS. I just had my 3rd interview at Walmart, so I think I will be starting work soon. I do have a college degree, but there are no jobs out there, and something is better than nothing for now. But I hope people can work with this medical condition. I do not receive disabilty.

I remember going into the room, the nurse put versed and Demerol in my IV, then I must have fell a sleep or something, then they woke me up during the procedure to pace my heart, I felt my heart racing, and the Dr. was asking me questions, then I fell back to sleep, then I remember waking up, they took me out to this room where I stayed for several hours, normally you get to home a few hours upon awaking, but the Dr. accidently cut my artery, so they didn't wanted me to get up and move around right away, but I felt good when I woke up, it's nothing to be nervous about. I was nervous the night before, but after having the EP Study done, I got nervous for nothing. My fear is, I am afraid of being put to sleep, but you don't even know your being put to sleep. And the procedure is painless. In fact, after waking up, was the best I had felt in a long time.

Broken Shell

The medications I take are Lexapro, Lopressor, Loratadine, Ibuprofen as needed, Klonopin as needed, and Ranitidine as needed.

Do any of these medications cause your cortisol levels to be high?

I looked up symptoms of cushings, I bolded the symptoms I have.

Signs and symptoms of Cushing?s syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates.

Other signs appear in the skin, which becomes fragile and thin, bruises easily, and heals poorly. Purple or pink stretch marks may appear on the abdomen, thighs, buttocks, arms, and breasts. The bones are weakened, and routine activities such as bending, lifting, or rising from a chair may lead to backaches and rib or spinal column fractures.

Women with Cushing?s syndrome usually have excess hair growth on their face, neck, chest, abdomen, and thighs. Their menstrual periods may become irregular or stop. Men may have decreased fertility with diminished or absent desire for sex and, sometimes, erectile dysfunction.

Other common signs and symptoms include

severe fatigue

weak muscles

high blood pressure mine is low

high blood glucose mine is low at times

increased thirst and urination

irritability, anxiety, or depression

a fatty hump between the shoulders

Sometimes other conditions have many of the same signs as Cushing?s syndrome, even though people with these disorders do not have abnormally elevated cortisol levels. For example, polycystic ovary syndrome can cause menstrual disturbances, weight gain beginning in adolescence, excess hair growth, and impaired insulin action and diabetes. Metabolic syndrome?a combination of problems that includes excess weight around the waist, high blood pressure, abnormal levels of cholesterol and triglycerides in the blood, and insulin resistance?also mimics the symptoms of Cushing?s syndrome.

At my last neurology visit, she wrote me out a slip to get some labs done, my lyme titer came back positive, and mythyroid came back low. She referred me to an endocrinologist. He said that he seen from a lab a while back that my cardiologist had wrote, that my cortisol was high. That was my first time hearing about it, I never knew my cardiologist wrote out a lab for cortisol, and was never told it was high, and I am assuming it must not be to important if it's the endocrinologist that had to tell me about it, if my cardiologist knew a few years ago. What is cortisol? And what causes it to be high? Anyway, this endocrinologist wrote out a lab slip, and told me to have my labs done right away, several tubes were drawn. He said to call him in 3 weeks if I haven't heard from him...

speaking of hair, i had a PTT treatment done a few years ago, it's a protein treatment by redken, don't make them anymore, anyway, I use to get them done all the time, my hair would feel soft afterwards, then this one night I had a treatment, within minutes after her applying it to my hair, it starting burning my scalp, it had never burned my scalp before, and might I remind you, I was perfectly healthy before this night, I go home, I go to bed, I wake up with this very weird headache, I had this weird feeling in my head, was extremely nauseated, my heart was racing, and I felt like I was going to pass out. I got in the car and drove to my parent?s house, later that morning my Mom took me to the ER. They drew blood, blood work came back fine, and they sent me home. It was a few months later before finding diagnoses. I use to think whatever was in that bottle at the salon made me sick. Maybe they don't wash them after using them, and bacteria and all sorts of things grow in them, I don't know. But I think whatever was in that bottle, when through my scalp into my brain and into my blood stream. lol.

Is there medication you can take for reactive hypoglycemia, or is it controlled by diet and exercise?

I too take metoprolol. I just picked up a refill on that today. I asked about the recall. She said it was recalled from some manufacturers, but they(where I get my meds) do not get their metoprolol from them manufacturers. So I was able to get that medication.

I had a nuerology appointment about a month ago, she wrote me a slip for some lad work. I called yesterday to see how my labs turned out. She said the lyme titer came back positive, so then it was sent out again for a different test, I can't remember what she said, and it came back negative. She said someone, not sure who said I don't have lyme disease o this other test would have came back negative. Just if anyone has had this happen. And my thyroid is low. She is having an appointment made for me with an endocrinologist.

I had an appointment with my family Dr. Yesterday, I told him how I feel weird sometimes, my heart races, and I don't feel right, I take my blood sugar when this happens, and it's in the 60's, he said what you have is hypoglycemia, and to eat protein, didn't want to do a oral glucose. I asked if their was medicine for it , and they said no.

Are you feeling cold when you are shaking? I use to get this before meds. I would either be hot, my face flushed, sweating, or I would be so cold and I was shaking. After being diagnosed with POTS and learning about it. I learned your nervous system regulates your body temperature, and when you have POTS, your nervous system is not regulating your body temp. like it's suppose to.

I feel the best in the winter, and worse in the summer. I would love to move to Florida, but because of my POTS and their warm weather year around, I think my symptoms would be worse down there. I think I would feel the best somewhere cold year around. Also, I am hot, all the time, it's driving me crazy. I would open my window sometimes if I thought no one would complain.

i was prescribed lexapro, but my medicaid would not pay for it, so then I was prescribed cymbalta, they say they are similar, they are not, I took cymbalta a few days, maybe a week, and had terrible side effects, the Dr. faxed a paper to medicaid to get them to cover Lexapro, and they did, I have tried zoloft, paxil, prozac, and wellbutrin also, lexapro is the only ssri I causes me no side effects..

I wore the 30 day event recorder and the 24 hr holter monitor prior to diagnoses. The 30 day event recorder showed tachycardia, and the holter monitor came back abnormal. I was sent to a cardiologist, and he diagnosed me with POTS. I haven't wore an event recorder or holter monitor since.

My arms feel the same way. I usually notice this when washing my hair in the shower. The rheumatologist that diagnosed me with fibromyalgia calls this thoracic outlet syndrome.

Melissareid,

Yes, I know you can get these brain zaps when withdrawing from ssri's, but i haven't withdrawn from my lexapro, I have tried in the past, but that's not what i am doing now, that's why I don't understand why I get these brain zaps sometimes.

Maybe I don't have sugar, but if a normal reading is 70-100, hows come my reading has been below 70 and above 100 at times. Why do I get jittery, and it goes away after eating. And why is my vision blurry at times.

Right now I have a fricken headache, I'm about sick of those.

Yesterday afternoon I had a bowl of life cereal.. then around 5 or 6pm I felt really nervous.. it's been happening to me for years.. my hands shake.. my heart races.. I feel funny.. I was diagnosed with POTS, so now when it happens I just assume it's my POTS.. because POTS affects your nervous system, right? But something made me check my sugar(bought a glucose monitor because I have always suspected low blood sugar).. it was 67.. so I drunk some milk with 1 teaspoon of strawberry nesquick.. I still felt nervous.. so then I ate one of them little plastic cups of pears.. then I was ok.. I checked my sugar again, and it was 109..

Any way I called the Dr.'s office today.. I said I want to make an appointment.. she said are you sick.. so I told her what I told you above.. so, she transfers me to a nurse.. I had to explain the same story again to her.. I told her I came their before about it.. I fasted all night and had blood drawn in the morning, but it came back normal.. . she said 67 was ok.. I said I knew I shouldn't have called you guys.. she put me on hold.. I hung up.. I don't know why I go there.. When I tell them something is wrong with me.. they don't help me..

Should I have not ate anything to see how low it would go? Would they have helped me then if the reading was lower?

So, for those of you that have low blood sugar? Is 67 low or not? And if I don't have low blood sugar, why is it when that nervousness strikes, and I eat something, it goes away.

Hows the Dr.'s don't listen to me. You know when I first when to them with my POTS symptoms, the Dr. said "I am going to send you to the hospital to get a holter monitor, and if that turns out normal maybe you need to see a psychologist". Why would he say something like that? I was sick physically, not mentally. The holter monitor reading came back abnormal, and he sent me to a cardiologist, and I asked him why he said something like that. He apoligized.

i have gained weight since being diagnosed with POT, i gained 40 lbs after taking lexapro and lopressor

can low blood sugar cause weight gain?

jump.. I think normal is between 70 to 100.. I have a glucose monitor because I have suspected low blood sugar for the past 10 years.. yes.. my grandfather had sugar and so does other family members.. I have had a lab test done where I fast and have blood drawn, but it came back normal..

This afternoon I had a bowl of life cereal.. then around 5 or 6pm I felt really nervous.. it's been happening to me for years.. my hands shake.. my heart races.. I feel funny.. I was diagnosed with POTS, so I just always assume it's my POTS.. because POTS affects your nervous system, right? But something made me check my sugar.. it was 67.. so I drunk some milk with 1 teaspoon of strawberry nesquick.. I still felt nervous.. so then I ate one of them little plastic cups of pears.. then I was ok.. I checked my sugar again, and it was 109.. I don't know if I should tell the Dr. or not.. they don't help me..

I am on my period, so I don't know if your sugar is lower during this time or not.. I wonder if this could explain my off and on blurry vision, flashing lights, feeling like I can't enough to drink, headaches, always tired, feet buring, can't remember anything..

EarthMother.. yes, I drink some milk.. and felt better

today I made myself eat every 2 to 4 hours, little stuff, hard considering i have no appetite

what is reactive hypogylcemia?

I felt funny last night.. like something was zapping my brain.. I checked my sugar... it was 5 hours after I had eaten.. the reading was 71.. is this normal?

I have had what feels like something is zapping my tongue, but it's in the front, not the back, and I have never said anything to anyone, til now.

Yes, I am so sick when I am on my period, for a whole week, I don't understand why at this time I'm in so much pain, and as if I am not fatigued anogh already, I am more fatigued when I am on my period, I was on birth control, which helped my symptoms, but when to the ER once, and he took me off, and gave me plavix for 7 days, never did understand that one, what can i do to stop by periods, afraid of surgery, don't need another people that makes me fat either

and before i got this..POTS... I was full of energy..I only needed 5 to 9 hours of sleep... now i sleep for sure 12 hours everyday, and the other night i went to bed at 8:30 PM, and didn't wake up til 12:30 PM the next day, i have tried cerefolin, didn't help, is there anything i can do to feel not so tired?

It started with a fast heart rate, especially at night, it would awaken me, I would be afraid to go to sleep at night, because I know when I lay down, my heart is going to race, and this made me feel uncomfortable, I was extremely nauseated, sometimes vomiting, diarrhea, oh my god, sounds sounded so loud, like their was a microphone in my ear that intensified every sound, and lights seemed brighter than usual, I would get hot flushes, I would get hot all of a sudden, and my face would turn pure red, but then 10 minutes later I would get so cold I was literally shaking, I was severely dizzy, lightheaded and felt like I was going to pass out 24/7,had difficulty breathing, it was like my nervous system quit working. Every day is different, some days I am ok, like today, I feel good, but just a few days ago, I felt terrible, I had this weird feeling in my head, I can't describe it, what ever your brain needs, I don't think mine was getting it, I don't know, and a few weeks before that for a whole week I sated in my room for 7 days, was in so much pain, and very tired, you know...actually i think it started a few years before I was diagnosed, I remeber when all of a sudden I would get hot, my heart would race and my hands would start to shake, I do have blurred vision, it comes and goes, floaters, and I also see tiny pin point sparks of light when looking at the sky or a white back ground. I have urinary frequency, especially after I drink Pepsi, I will pee 10 times it seems, and I have diahrrhea pretty much all the time, I use to have a hard time holding my head up, had difficulty swallowing, and one summer my feet felt like they were on fire, but this doesn't happen anymore, finally i was diagnosed in 2004, put on lexapro and lopressor, and this did help quite a bit, my question is, why is it when i try to go off of it, the lexapro, why do I get sick again, I know I will never be able to go off the beta blocker because i have tachycardia, but why do i need lexapro, i hate taking it, it makes me fat, i was thin before i started taking these meds, i have tried other ssri, but they make me sick, lexpro is the only ssri i can take, i just don't know why when i try to go off of it, my nervous system fails.